This blog is about my experiences with hypothyroidism and to swap notes with other people. I was diagnosed in 2009 and am still not entirely well, though I’m much better now than I was. I set up a thyroid patients' support group in London in 2010 and we continue to meet regularly and welcome new members. There's lots of info on the net aimed at thyroid patients, much of it contradictory and confusing. My aim is to provide a more balanced perspective and information from credible sources.

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Wednesday, 21 November 2012

A story from the front line of providing volunteer patient phone support

As many of you know I provide volunteer phone support for
thyroid patients.

It’s not something I particularly wanted to do but when I
offered myself as a volunteer local co-ordinator to the British Thyroid
Foundation, which I did because I was ill and needed a support group in my area
and there wasn’t one so I was determined to set one up, it turned out that part
of the role was to have my number listed and to take calls. It didn’t appear to
be negotiable.

Anyway, I get on average one call a day, sometimes more,
sometimes none, and I’d much prefer to be able to manage the time I spend on it
it, so that I was only “on call” as it were, say once a month for half a day,
or once a week for an hour or two, (I do a lot of other stuff for BTF, it’s all
time consuming) but the charity don’t have the resources to set up such a
system so instead they list phone numbers for all the different volunteers
around the country and people needing help take pot luck ringing these numbers
and hope they catch someone at home and able to support them. The list says if
there are particular times people are most likely to be available and also what
conditions they can talk about from personal experience.

I find that I appear to be providing a valuable service - I think literally everyone I’ve spoken to so far (I’m guessing 500+ individuals) seems incredibly
grateful and tells me I have been helpful - and the people who ring are
generally so lovely and often so distressed that it seems to be an important
thing to continue with.

Earlier today I spoke to a lovely lady on phone, she has
been feeling very tired and unwell for several months, describing lots of
symptoms that sound like hypothyroidism but could of course be something else.
Her doctor has been monitoring her TSH for 6 months and says he expects that
she will soon need thyroxine but he will not prescribe it until she has gone
above a TSH reading of 6.9. He has not offered to do ANY other tests (not even
T4 to see if that is low in the range, never mind B12, Vit D, calcium, iron,
etc...). Her latest blood test results say that her TSH has come down rather
than gone up, still around the five point something mark. She still feels
rotten.

Her doctor apparently told her nothing can be done, she's
getting old, at 47, and just has to live with feeling crap!

This is sadly not an untypical call for me. What can I
advise? Some GPs may be inclined to give a trial of thyroxine with the symptoms
and TSH reading described. It’s a judgement call. If they’re not going to do
that - and it is not by any means necessarily the best thing to do as
prescribing thyroxine when it’s not needed can cause all sorts of problems - my
understanding is that they should certainly be looking for other causes of the
symptoms. I told her that.

I had in fact spoken to her previously and sent her a
leaflet I have, about how to talk to doctors, as I know that sometimes you have to
be smart with your communication skills to get a doctor to listen to you and be
on your side and she had expressed difficulty in getting the man to listen to
her before. On this conversation we agreed that
it sounded like she had tried to do everything right on the communications
front. She had been clear and specific and non aggressive.

The lady reported that her doctor seems concerned about the
cost of everything and unwilling to listen. She described feeling that he just
wasn’t interested in her symptoms.

She said she was considering going private because her
quality of life is so badly affected and she is desperate to get some treatment
that will help. I hear this a lot from
people. It breaks my heart.

I said that she is entitled to a good quality of care on the NHS and shouldn't have to go private. I said I felt the doctor wasn’t following best practice
if she didn’t feel she was being taken seriously. I told her it sounded totally
unreasonable to me for her to be told she is “getting old” and can’t expect to
feel well now she has reached the age of 47 (that’s not “old” is it??). I said
that it was not reasonable in my opinion that the doctor was not conducting
further investigations to get to the root of the problem. I told her that there
are moves afoot in the NHS, with the reorganisation and strengthening
of the NHS
Constitution, to make doctors more accountable for the service they give
their patients and that really it would be a good thing to give some feedback
to the practice manager or the PCT as if the doctor doesn't get any feedback he may not realise the negative impact he is having, but that I understood she probably didn’t feel up to
going down that route. Complaining is a very scary thing to do when you feel
unwell. I know. See my earlier
post on this subject.

Ultimately I told her that she is entitled to both further investigations and a second
opinion and I would advise her to ask to see someone else - either another GP at that
practice or through a referral to a specialist - and that if there isn’t a GP
at her practice that she feels will listen to her, if I was her I would be
seriously considering switching GP. She
was concerned that another GP at the same practice would likely “side with” his
colleague. I hear this concern time and time again from people who ring me. I guess it depends on the individual doctors whether that will apply or not, but the fear amongst patients seems very common.

She thanked me a lot.
She said the information I was able to share was helpful and that it was
reassuring to have someone listen to her concerns. She will talk to her husband
and decide what to do from there.

I
felt so cross on her behalf I came off the phone and sent a tweet about it.....

@lojinks: “just spoke
to a lovely lady on phone, feeling very tired and unwell, doctor tells her
she's getting old at 47 and just has to live with it!”

My next post will show how a conversation then developed on
twitter, with both health professionals and patients commenting. It was very
illuminating and I’m hopeful that as well as connecting with other patients online I may have made some valuable new contacts within our healthcare system, with whom it will be worth engaging further with, with a view to sharing insights and working towards positive changes for patients with
chronic illnesses (not just thyroid patients)

Relevant hashtags are:

#nhbpm (yes I’m still
trying to keep up with this WEGO Health campaign, posting more in November than
I usually do, though I haven’t managed every day!)

and #NHSChange (a new conversation I discovered today, check it out)

I’ve written enough for one day but have much, much more to say– will follow up soon. Tomorrow if I can manage it.

Au revoire for now, my lovelies. If this story has struck a
chord for you I’d love to hear your thoughts.

4 comments:

I find the whole concept of talking on the phone with people who are struggling so refreshing. It is nice to hear of people out there starting a phone support system. I have been researching a lot about thyroids recently (specifically hypothyroidism) because my mom has it. I find your blog very informative. Thank you very much for updating it as often as you do!

thank you for those encouraging words Kloppy! I hope your mum is doing okay and it's smart of you to gen up for yourself, both with her interests in mind and potentially also your own as the illness does sometimes (not always) run in families. It's good to be informed and good to share. *waving and smiling*

I was told at 35 that I was "not as young as I used to be" and that being tired all the time was "just one of those things...." after all my blood results were normal!ps - personally I'd be practically comatose with a TSH of 6.9 - anything over 1.5 and I'm struggling.